Numbers, numbers, numbers. I can't even get corroborating printouts of my test results. Saw them online at an appointment, asked later for the nurse to print me out a copy, different numbers. They stuffed up my treatment several treatments ago and dod not administer side effect drugs and I was sick as a dog. I started out with a good frame of mind. The cancer centre was a haven for hope. Now I feel so different. I have to watch and question everything they do. Some of the nurses are not so competent with some procedures and I dread the time I have those nurses again and have to tell them to get a different nurse because I won't let them perform the procedure. I've lost faith and trust in them. I have had a problem with smells in the centre and I have told them every week it is making me nauseous. They just shrug it off. Finally I figured out it was the antiseptic. Seems after being on my skin, or in contact with bandages, the smell becomes intolerable for me. When I do the extended pump treatment it makes me nauseous all the time. Now the smell of the clinic itself is making me nauseous. It's like there is never any fresh air in there. I try to sleep through the treatment to make it through, but I don't want to/can't eat while I am there and it is a long treatment, all day. I read posts where people say their CA19-9 readings and I can't relate. My numbers seem so different. I see the promise of the immunotherapy trials and hear about some responding so well. How can I get into this treatment? Are the doctors even looking into other options for me? I don't think so. They must be swamped with the number of patients they handle. The doctors say I am doing very well. But do I believe them? Not really. The numbers don't suggest that to me. I'm just confused. I want to know how much time I have left. I have things I need to do. But I am too fatigued to get much done. When or do I quit chemo so I can feel more normal to get stuff done? Most of what I know is from my own research. Why not have a room at the centre where someone helps patients with that kind of stuff? Our time is valuable and each of us as well as loved ones spend tons of time reaearching. I'm stopping here. There is so much more. Sometimes I wish I hadn't gone to the emergency room with a pain in my abdomen thinking I had appendicitis. My last 5 months would have been normal. Not full of confusion, trying to protect the only 3 people I have told and my privacy. Worrying every day that my husband will break down and tell someone else in this nastily gossipy community. He's already said too much. Thanks for the rant time. Didn't really help but.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.